This is an update of a post I did a couple of years ago. It seems like a good time to run it again and remind all of you that you are not alone.
We have covered a bit of this ground before, and again I urge you to communicate, take the rest (and medicines) you need, and use your coping strategies to get through the stress of the holidays.
Stress can be part of the “Holiday Package.“
You may be putting family events together for a variety of holidays, gathering to open gifts, and doing things you haven’t been able to do for a couple of years. It can be hard to get back into the swing of things.
Presents? Big dinners? Oh, don’t get me started! The logistics of getting everything to everyone with the uncertainty as to whether things will get there in time…
My point, my Burning Mouth Syndrome brothers and sisters, is that it can all be stressful. Life in general right now can be stressful and if you are experiencing more pain than usual, you may be suffering a “flare” that has been caused by it.
What can you do?
Make sure you are getting plenty of sleep and hydration. Take your medicines faithfully if you have been prescribed them. Now is not the time to let depression from chronic pain take over, so schedule a telehealth conversation with your counselor or therapist if you have one. Keep your coping strategies at hand! (Cold drinks, Advil or Tylenol, meditation, exercise, whatever works for you!)
Mask up if you are unvaccinated/boosted or haven’t had COVID recently when you are in crowded spaces with other people. Flu and RSV can be as communicable as COVID and you don’t want any of these holiday guests, right? These vaccinations are available right now, but they take a couple of weeks to be at full strength. Children are taking a particularly hard hit with RSV and Flu so protect them as well.
But what about family and friend conversations? How do I handle them when talking seems to make me burn even more?
Yeah, that’s a hard one, but think about what you really want to say to precious family members and say it. Don’t waste your pain tolerance on chitchat if you can avoid it.
Be frank with your family about your pain and what helps and what doesn’t. They love you and will understand if you are a bit quiet during a visit or on a call as long as what you do say comes from the heart.
And that is what the holidays are all about, whether the folks you love are near or far, virtual or in real life. Love is rarely an unwelcome present.
Happy Holidays to all of you, and let us all know how you are doing!
A Burning Journey 
Your post are always so encouraging for me. I enjoy reading about your journey. I can’t imagine this may last the rest of my life. With that being said, stress does affect me.
I finally got my answer to my low ALP levels and my severe dental issues. My genetic testing came back positive for Hypophospatasia (HPP). I’ve suspected it for two years but I couldn’t convince the doctors to run additional test. Last summer I found a wonderful provider. She listens and ponders my concerns. I shared my medical records with her and she agreed my ALP should not be low for twenty years. She started testing and once again I returned to Mayo Clinic. The doctor there thought I may have HPP so he ordered a genetic kit I did at home. It’s a life changer to finally have an answer. I think back to my dental phobia. I would listen to how terrible my dental health was despite what I did on a daily basis. The shame I felt left me scarred. Now I can move forward knowing there was a reason.
This year I’m looking forward to Thanksgiving. I have many reasons to be thankful. Another move or I say adventure. My youngest daughter getting married next September. My grand daughter with special needs is proof miracles happen. She started a program at a great college in St Paul. Beyond proud!
Wishing you and your family a wonderful holiday season. I’m onboard with you, finding a treatment or cure for BMS would be life changing for so many.
Hugs
Jan
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Jan,
Thank you for your kind words. I am glad you have found an underlying reason for your pain and perhaps others with BMS have this condition, as well. I have hesitated to do the genetic testing (I don’t have the inherent symptoms you have experienced) because I don’t totally trust that it is private information that can’t be disseminated to insurers, etc. There are just too many “hacking” incidents and incompetency on the part of institutions that should protect our privacy for me. I assume that genetic profiling is inevitable someday, but not interested in being part of it today with the present protections. I would, of course pursue it if I suspected a genetic disorder was at the root of my pain. That is just a smart thing to do.
I am so glad you have wonderful things to look forward to! It really does make a difference. I am having such lovely times with my new grandbabies (Olive in July and George in August!) They are so engrossing and diverting that I often don’t even think about my mouth for long periods of time. It’s not that it disappears or anything, but I am not focused on it and and that is wonderful!
Have a lovely holiday season and I hope that treatment of your HPP is possible and successful.
Hugs to you, as well!
Kali
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I am a BMS patient from China, I am very happy to find this place, I have had BMS for three months, I am surprised that you have persisted for more than ten years, I will continue to pay attention to you, I hope we will all get better
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Justin,
I am so sorry you have joined us in the BMS community, but I am grateful you found us. Yes, many of us have had this burning mouth pain for years and decades. I hope you find medicines and coping strategies that help you cope, and that the experiences in this blog (both mine and people who have commented) are helpful to you. Keep in touch and let us know how you are doing and if you have specific questions we might help you with!
Kalí
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Kali, glad to hear that I’m a 42-year-old male (rare, isn’t it?). BMS patients seem to be menopausal women). My BMS started in September of this year without warning. My tongue was numb, burning, uncomfortable throughout the day, but it didn’t affect my sleep, and the discomfort would gradually come back when I woke up in the morning.I tried to see a doctor, the brain and neck MRI showed that I had no tumor and nerve compression, I took adenosylcobalamin and Chinese medicine, but there was no improvement.As I recall, there were two potential reasons for my BMS. I had one of my upper left wisdom teeth removed in June this year which may have damaged my trigeminal nerve (but BMS only started in September, which is confusing), and then I started taking enalapril (an ACE inhibitor) in June this year to control my high blood pressure, I saw on Google that BMS may be a side effect of ACE inhibitors, so I have stopped taking it for now (I haven’t taken it for 2 weeks, but the discomfort is still occurring, it will take time for it to take effect? I don’t know).I am now starting to accept the reality that BMS will be with me for the rest of my life and can only accept pain management.What I want to know is, can you take clonazepam for a long time? I guess in China, it’s not easy for doctors to prescribe you a high dose of clonazepam because it’s an antidepressant
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Justin,
Your pattern of pain fits BMS perfectly, and although men are not as often affected, there are many who are.
I too, suspect dental procedures were the cause of my initial round of BMS pain in 2006. I went into remission (Yes, this CAN happen.) but then two years later in 2008 I had to have procedures on those same teeth and BMS came roaring back and has been with me ever since. BMS sufferers have dryer mouths and lower saliva levels, so that can lead to more decay and gum issues. I deal with this by using xylitol as my sweetener of choice, but even dental cleanings can cause a minor flare and more invasive ones can cause larger flares.
Clonazepam ODT (orally dissolving tablets) is the only medicine out of the many I have tried that actually seems to mitigate my pain at a very low dose. I usually take less than 1 milligram per day but my Neurologist authorizes up to 2 milligrams if I have a flare. My only side effect has been drowsiness, so I have switched over the years to taking it in late afternoon/early evening to blunt the worst of my pain cycle. I have not had addiction issues, but I understand some people’s brains are more susceptible to that, so work with your doctor to take whatever medicine you decide on safely, and never just stop taking a prescribed med. They usually need to be ramped down.
Please feel free to send your doctor to the BMS Support website (there is a link to it on this blog) for research and abstracts that have been done over the years. It may be helpful and the research from Miriam Grushka in the early 2000s is particularly relevant.
I hope you find coping strategies and medicines that help you get your pain under control and allow you to live your life. Remember distraction is your friend and if there is something you like to do, do it! Also stay well hydrated and take good care of your teeth. Reach out for help if the persistence of this seems overwhelming. Depression is also a side effect of BMS and not the other way around!
Please stay in touch and let us know how you are doing.
Kalí
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Hi Kali
Yesterday I went to see a new neurologist who looked at my brain MRI to make sure I had no organic problems and then prescribed me carbamazepine (which I hadn’t taken before) at a dose of 100mg (half a tablet) three times a day. At my request, clonazepam was also prescribed to me.
I took carbamazepam this morning and I feel okay at the moment, no burning sensation, the pain seems to turn into a tolerable tingling. I decided not to take clonazepam for the time being, so as not to be confused about which medication was taking effect.
I will continue to observe and keep us in touch.
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Justin,
I am so glad you saw a neurologist. That specialty has been of the most assistance to me over the years. I was prescribed carbamazepine by my first neurologist, but found that over time, clonazepam was a better fit for me. Miriam Grushka’s research also found that Gabapentin/Neurontin was effective for many. There is an advanced formula now called Lyrica, but I have to admit none of these were effective for me, personally. I feel like I have tried nearly everything!
BMS is a highly individual syndrome, however, and different meds and coping strategies work for different people. You just have to try them and see. I am glad you are getting some relief, Justin, and I hope you will take the time to keep a pain diary. That one little strategy can give you and your neurologist so much useful data, and you will spend much less time wondering if a med is working or not. Yes, their effectiveness can change over time. I have a couple of posts on this blog about keeping a pain diary, and you are welcome to read them and see if anything sounds workable to you!
Good luck, and I hope you are feeling better about living with BMS and that your journey with it will be a short one.
Kalí
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Hi Kali
I am back. Despite taking carbamazepine, the burning sensation is still there, just a little milder than before (only the tip of the tongue burned yesterday afternoon, not the inside of the lips). I will take it for a while to see if my body will gradually accept this medicine.
I have two questions that I would like to discuss with you, my symptoms are very strange and regular, from getting up in the morning to before noon, usually numbness or foreign body sensation at the base of the left side of the tongue, and in the afternoon it is usually burning at the tip and sides of the tongue. In the evening, these sensations will get better, and then disappear completely at bedtime (but dry mouth will be felt). What are your symptoms? Also, did you know that BMS has examples of self-healing? (Some people say that BMS will accompany me for life, which makes me very desperate)
With clonazepam, do you take it in your mouth, melt it and rinse it and spit it out, or do you swallow it afterwards?
Looking forward to your reply, thank you
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Justin,
Good strategy to give a med a fighting chance to help you. But be prepared to ramp off of it if it is not helping your pain soon. Always a good conversation with your neurologist.
Regarding your symptoms, I must say that BMS is generally bilateral. In other words, it affects the tongue or oral cavity equally on both sides. Specificity to one side or another may indicate something else going on that an Ear, Nose and Throat specialist could weigh in on. You want to rule out the horses before deciding your problem is a zebra. The escalation of your burning is typical, but it is not typical that your symptoms would disappear at bed time. BMS neuralgia escalates through the day and peaks in evening hours unless a medicine or coping strategy pauses or resets the pain cycle. People do not experience the pain while they are sleeping, but the cycle begins again upon waking up. Eating and drinking can temporarily ease the discomfort, but it returns soon and continues escalating through the day. Do discuss this with your neurologist, because if this is NOT BMS, there may be a nerve block or different medicines that could make a big difference.
Re: Clonazepam ODT, I dissolve the tablet on my tongue, swish it around for maximum absorption by the oral tissues, and swallow it.
I rather hope you discover that your problem is not BMS and is instead something that can be treated and even cured. That would be awesome! BMS is not self-healing as I understand the term, but like some other chronic pain, it can go into remission. I did that for nearly two years, but with the next dental issues, it recurred and has remained. Remission is awesome, but entirely unpredictable.
Good luck, Justin, and keep us in the loop as you investigate your atypical pain cycle.
Kalí
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Hi Kali
After four days of use, I must say that carbamazepine did not bring a lot of relief, so I started using 0.5mg of clonazepam on Sunday night (last night), dissolved it on the tip of my tongue, mixed my saliva and rinsed my mouth for three minutes and swallowed, so far, the results are amazing, there was no burning all day today, although it is said that clonazepam does not cure BMS, but I am satisfied enough. Is it addicted? Is it painful to quit? (I don’t want to think about it that much for a while)
Coming across your blog is a gift from God before Christmas, really appreciate you and your blog
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Justin,
I am sorry that the carbamazepine did not bring relief, but four days may be an inadequate amount of time for a real test. I know it did not do anything for me, but I was on it a much longer time.
So, on to Clonazepam. I am so happy for you that it helped your pain! It is a benzodiazepine and a controlled substance drug so addiction is always a possibility. You are on a low dose and that is a good thing. When I started on Clonazepam Orally Dissolving Tablets (ODT) years ago, the questions my neurologist asked were, “Had I ever been addicted to anything?” and “Did addiction appear in my family?” The answers to both for me were No. Your neurologist may ask something similar. I agreed with my neurologist that I would never go over 2 mg per day (people with actual convulsion issues go up to 8!) and to be frank, even in the midst of a bad flare after dental work, I never needed to go over 1.5 mg and then for just a few days. Drowsiness is my only side effect, so as your neurologist probably told you, see how it affects you before you drive or operate heavy machinery! I have been taking Clonazepam (varying dosages as needed) for over 13 years and have no problem adjusting dosage or even going without if I don’t need it. No withdrawal or side effects. I am not sure that would be the case for everyone, so if you have serious concerns about addiction, that is definitely worth a conversation with your neurologist.
Justin, you may have been lucky enough to find what helps you the most and although I will always stress that I AM NOT A DOCTOR, I am honored to have been a potentially helpful stop on your journey.
Merry Christmas and keep yourself rested and hydrated, even through the holidays! Those coping strategies are always good ones!
Best wishes,
Kalí
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Hi Kali
Today is the third day without burning since I dose clonazepam 0.5mg*2 each day , and these days I have almost forgotten about BMS when I talk to family and friends and work with colleagues (a few small tingles remind me that BMS is still there, but it doesn’t matter), and life seems to be back to square one. This change is inspiring.
To be honest, I even had suicidal thoughts when the pain was at its worst, and clonazepam saved my life. I would like to seek your advice, do I need to reduce the dosage, or only take it when the burning pain starts?
In addition, I have been reading some popular science articles recently, if BMS is neuropathy, can it be cured by surgery? Have you done any of this research? Are there any BMS patients who have been cured by surgery?
Looking forward to hearing from you.
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Hi, Justin!
So happy you are getting relief! Enjoy it and as for adjusting your dosage, please don’t unless you and your neurologist have discussed it. It sounds like you have lucked into a very good result with it and this early on it would be a shame to mess with success unless it was necessary. Take it every day at this point unless your neurologist says otherwise. After you have been on it a long while, it may work for you to adjust the dosage, but wait. You are on quite a low dose.
Suicidal thoughts with BMS are very common. It is the persistence of the syndrome that weighs us down as it does most chronic pain sufferers. If you get those feelings and thoughts again at some point, please reach out for help. I learned that one long ago and am happy to share this wisdom.
There is some scientific research out there, but do check into the research on the http://www.bms-support.org/ site for the latest. There is not a foundation or research information organization for this disorder so we have created our own resources. Read through at your leisure and be prepared to realize that the studies so far have been quite limited.
No, I have not heard of anyone who has been cured by surgery. I personally have had every possible nerve block, thinking perhaps that would be an answer, but it was not. This diffuse burning that we experience does not seem to originate from a specific nerve, but rather may be a group or the hair-like nerves present in the oral cavity. It would be very difficult to block them or operate on them with any lasting success. I am sorry, and perhaps time will uncover a therapy that works, but for now, Clonazepam is the only tool I have that really works for me.
Wishing you well!
Kalí
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Hi Kali
Although clonazepam has been very helpful, tomorrow I still have an appointment with an oral mucosa doctor, and I hope that the oral problems can be completely ruled out (although I don’t think I have any organic lesions in my mouth, such as ulcers and mouth sores), and my wife will accompany me, and she has been there for me and encouraged me, which makes me feel at ease.
In addition, I bought alpha lipoic acid, some literature suggests that it can improve the symptoms of BMS, but there is a lack of substantial evidence, I take 1200mg a day, and I am ready to try it for 2 months. In a Chinese proverb, this is “treating a dead horse as if it were a live horse”, meaning you have nothing to lose.
Let’s keep in touch.
If leaving a message under your article will make other readers who read this blog uncomfortable, I hope to contact you by email, what is your email address?
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Justin,
I am so glad you are continuing to rule out other, more treatable conditions. The hallmarks of primary BMS (primary meaning no underlying health conditions) are the lack of any visible symptoms (no lesions, sores, or geographic tongue) and an escalating pattern of increasing burning pain through the day. Drinking and eating can give temporary relief and taking a nap can reset the escalation pattern. There is no pain when we are asleep.
Alpha Lipoic acid has been tried for many people (I used it for a long time but it never seemed to affect my pain so I eventually stopped investing in it) and for some it has been helpful. There is no risk that I know of to trying it and you are right, you have nothing to lose.
I would switch to email with you Justin, but the truth is that you are giving such good information and are showing other new sufferers how to approach this jigsaw puzzle that becomes your life with Burning Mouth. I hate to deprive them of this conversation we are having. However, if there are questions that you have that you would rather not post, you can reach me at kalirourke86@gmail.com. Let’s keep your investigations public as much as you are comfortable though, because you never know when what you are doing is the key to someone else’s coping strategy lack or other need! Let’s do keep in touch!
I am glad you have reached out and wish you the very best.
Kalí
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Hi Kali
Last Saturday I visited the oral mucosa doctor as scheduled and as I expected, he diagnosed me with BMS after examining all my reports and my mouth. He approved of my clonazepam medication and suggested that I go to the psychiatrist for an anxiety questionnaire.
I’m currently hesitating, I’m not going to go to psychiatry, because in essence I don’t think I suffer from depression (if there is, it’s after BMS), family and friends say I’m always an optimistic and interesting person.
What would they do if the psychologist diagnosed me with anxiety? Will the anti-anxiety medication change and be added? It will not be what I was expecting as I got enough relief now .
Kali, what do you think? Should I go for anxiety counseling?
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Justin,
As always, I must begin with the fact that I am not a doctor and cannot give you medical advice other than my personal experiences.
BMS is a highly individual experience, as is most chronic pain. I had suicidal thoughts a few times over the fifteen-plus years I have dealt with BMS and as I have said in my blog posts, depression is not a norm for me. I am an optimistic and positive person but the persistence of BMS really got me down and so finally I went to a therapist.
We had several sessions and I did find it very therapeutic to have a person to vent to that was not personally connected to me and was very balanced in her perspective. I could rage, I could cry, I could curse fate for giving me this disorder, and I could ask why, even though no answer was possible. And most importantly, I could do this with someone who was not going to be shocked, hurt, or offended by anything I said. (Trust me, this is very rare to find in relatives or friends…they love you and can be frightened by your feelings.)
So, should you go to a psychiatrist? I guess my reaction would be, “Why not?”
You know you are not a depressive personality and that this disorder is what is bringing you down. If a low dose of an anti-depressant will help you deal with your feelings of anxiety while you deal with your situation, it may be the way to go, even if it is temporarily. Discuss your reservations and your aversion to anything habit forming and if nothing else, you will be armed with more information.
I hope that you continue to get relief and have good times ahead. Savor life, Justin. Sometimes we get handed something difficult and it is up to us how we react to it and what we do with it. We have control over little else.
Let us know how you are doing, and what you decide!
Kalí
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